Shriners
Hi,
Spencer does not have a cyst and his whole spine was weak, not just one spot, so I don't think I can really say much about your diagnosis, but it sounds like you have finally got some good docs looking into it. You may want to stick with them for now.
We are, however, patients at Shriners SLC, and I have to say that we have had unbelievable care there. The pedatric ortho docs have really been incredible, and since they team with the local children's hospital for clinic we also see nuero, pediatrician, and physiatry docs at Shriners on clinic days. I dont know if this type of clinic is done at other Shriners and it sounds to me like you need either a pediatric nuerosurgeon or neurologist who has had experience with scoliosis and cysts looking at your MRI's and tracking your daughter. You need to go where your daughter can get the best care and where you feel the most comfortable.
I'm glad you have finally got some answers and can now make plans on how to treat your daughter's conditions. Keep us posted.
Spencer's Dad
11 year old boy with PMD Luekodystrophy
Nonambulatory, nonverbal, nonweight bearing
VRO and Pemberton hip reconstruction at age 5
Nissen fundo at at age 7
Subdermal spinal drug pump at age 9
Complete Spinal Fusion Jan. 9, 2007 at age 10.
118 degree curve before surgery - less than 25 after!!